Wednesday, April 06, 2011

Change of direction

Sometimes you really have no choice.

I am going to be changing the subject matter for my blog here. I'll still post my paintings and other art stuff, but most likely not as often.

On April 1st, just a few days ago, I was informally diagnosed with cancer. I don't know specifically what type or how far its progressed until a biopsy can be done next week.

All through December and January I had a bad cough. A remnant of a cold that soon became bronchitis. At the time, I had no insurance. I had let it lapse when my employer, Pizza Hut, sold this region to a group of investors. The new owners decided, even though they were the ones who chose to make an investment of that magnitude in the deepest financial crisis since the Great Depression, that they couldn't let sales slump or even stagnate - growth is the only 'must'. So they cut the driver's wages virtually in half. I was making minimum wage as a driver. The new paycut, for drivers only mind you, cut us down to server wages - $4.25 and hour. At the same time they cut our wages, they also cut my hours. I know a few drivers and it seemed almost across the board. My hours went from around 32 a week to about 16. So yeah, in half too. My paycheck had been about $400.00 every two weeks. Now it's $150.00. So I went from about $800.00 a month wages to $300.00. Anyway, this is why I let my insurance lapse. I simply couldn't afford it any longer. The church was already helping me with rent as it was.

But I digress. Eventually I couldn't deal with the cough anymore and went to the urgent care office near my work. I got some antibiotics and all was well. I also applied for the new BBH Inc. insurance. Right about the time I finished the course meds, I noticed that the gland on the side of my neck was swollen. I knew from years of doctor visits that they always check them and ask about them when complaining of throat ills. I also knew it probably wasn't a good thing.

I went back to the urgent care place and the doctor (always a different one) said he'd prescribe an antibiotic that targets that area, but if it doesn't go away, come back for an ultrasound.

It didn't go away. I admit I was pretty nervous at that point. I found myself Googling for info. Anyone who's done this would understand that this is probably not a good idea. I avoided the images section and just focused on information, which was less than encouraging. Every search I did for "lumps in neck" or "swollen lymph nodes" etc., came up as either Lymphoma or the node acting as a marker for another, unnoticed tumor somewhere else. Did I say I was nervous? Now I was almost panicking inside. My roommate's son had Non-Hodgkin's Lymphoma when he was a young child, and he's still here, in full remission. Didn't help my inner dialogue at all. I dragged my feet for a few days and then finally went back to the urgent care office.

It went a bit as I expected. I paid another $100.00 to be told I would have to pay another $250.00 for a CAT scan. I couldn't get my damn insurance cards to print online because apparently Cigna/Starbridge is too small a business to know how to build a working website.

The CT was quick and easy. Even the IV of iodized whatever, to make my blood show up, wasn't too bad, and I'm a pussy when it comes to needles. That's about the end of "quick and easy".

I was told the scans would be ready in about 2-3 days. After 3 days of waiting I called the office to find out that they've been dialing a 480 area code instead of my 407 cel area code for 3 days, and had left messages on some non-working message service.

I went back to urgent care and spoke with the office. The woman there gave me a sheet describing the scan results. I had a mass in my neck with several "low density areas that might indicate necrosis or abscess". I was encouraged by this, thinking an abscess, even one that was fairly problematic due to the location, would be much better than lymphoma. They gave me a list of referrals to ear, nose, throat docs, which I took as another encouraging sign. After all, why would they send me to an ENT if I had cancer. Wouldn't they refer me to an oncologist? This visit only cost me $15 since I finally got my ins cards in the mail.

I called the office on the list that was closest to my home. A Dr. Mostafavi. The woman on the other end was terse and a little rude, and when she asked if I had insurance (her second question after "name"), I fumbled with the name since it was new and I wasn't quite sure. In the time it took me to get my wallet and pull out the card to give her the correct name of this crappy little sub-prime insurance wannabe, she spit out something about not taking that insurance and hung up on me.

So I called the other office that was fairly close. A Dr. Janelle Engel. The woman who set the appointment was very nice and she took the information regarding my files and the CT and the urgent care place. Or at least I thought she did. The day before my appt, the office called me to tell me they postponed my appt because they couldn't get the files from my doctor and that he had to leave early that day anyway. Only I didn't get the call. I went to the office for my appt, not knowing it had been changed. After I was told why I was pretty shocked and more than a little angry. I explained again that I didn't have a family doctor, I was referred by the urgent care facility. She said they don't have the scans. I told her I would get them myself.

If they had tried to call me earlier I could have gotten the files for them and not have had to reschedule, but they called the day before my appt, as if they meant to reschedule all along and the file issue was just an excuse.

The next day I went to the urgent care place and asked for my files. After about 30 minutes they came out with my chest x-rays from my bronchitis. I asked about the CT and she said they don't ever get those. The imaging place has them. So I called the imaging place. Tomorrow. My appt wasn't for 3 more days so I picked up the CT files the next day.

I brought the disc to the ENT office and asked the woman at the desk if I could see another doctor earlier. In the few days I'd waited and been strung along, my tonsil had grown and was looking like it would close my airway soon and I told her so. She looked at me like a goldfish in a bowl. The other women in the office volunteered that I "wouldn't want another doctor for a neck dissection", that Dr. Rothman was the man, the best in his field in the Valley.

I left angry and dejected again. Oh well, 3 more days isn't terrible.

On April 1st, I met with Dr. Rothman. I felt like the women in the office were much nicer to me this day than the two earlier times, like either they knew they messed up or, now that I was a legitimate patient, they no longer looked at me like I was some homeless guy harshing their garden party cuz I asked for some change. They answered my questions almost too nicely. At this point I was so keyed up that even "too nice" was a good thing.

Although I was feeling a lot of stress and anxiety, I felt the chances that it was an abscess were good. After all, wouldn't it say something more ominous on the report? I've since learned that the word "mass" was the ominous note I missed. Dr Rothman was very friendly but there was a note of seriousness that I caught immediately. He prodded my tonsil with the tongue depressor as he looked in my throat. Asked if I had been coughing up any blood (no) or if I had earaches and a sore throat (yes to both). Headaches too. Nothing I hadn't been asked a hundred times before by a doctor.

I was feeling anxious but fairly confident it was not cancer until he said tumor. I don't remember feeling shocked or surprised when he said the word, I only remember asking. "Tumor? What? Benign? Not?"

He said, "I can't see how it's not cancer."

I don't think I'll ever forget that.

He told me he recognized it from just looking at the CT, didn't even really need to look in to confirm it. He said he wanted to do a thin needle biopsy. I knew these were no big deal but still told him of my problem with needles. He said that he was positive enough that I didn't have to go through that if I didn't want to. I said I'd rather not have the needle if it's not necessary.
A more in-depth biopsy would be needed either way. He told me it would be under general anesthesia and I'd need someone to drive me.

After he had said tumor, he asked me how I came to be in his office. I explained briefly about the bronchitis and the appearance of the lump as well as how I came to be referred to him. He seemed puzzled about it and asked again in a different way. I told him about the first office being snippy and terse and how I had asked for Dr Janelle but was told I would be much better with him, as he was the best in the Valley in this sort of thing. He said that was what was odd. Not only was he a specialist, and one of only two doctors in Phoenix who do specialize in this, he specializes in exactly what I have: a tumor of the tonsil. I was worried he was trying to find out if I was legit or something, like I shouldn't be there or was pulling some scam because it was just too coincidental. I'm just glad I got lucky on at least that point.

We talked about the biopsy and he asked me if I had any questions. I'm sure I should have asked him about a hundred but I couldn't think of anything. All I could do was mumble something about at least knowing what it is now and shook his hand and walked out to the front desk in a bit of a haze.

I drove home, trying not to lose it. I would not be able to call my daughter or my parents until I was sure I could keep it under control. I knew it would be worse if I tried when I was this emotional. I got home and told my roommate. I avoided calling my parents for the time being. About an hour after I got home my dad called. He was having dinner at a restaurant with my mom and Kaia, my daughter. I knew once I told them, dinner was destroyed, but I couldn't 'not' tell them or they'd know something was wrong and their imaginations would make it worse.

I told my dad and he tried to give me some encouragement. I hung up knowing that he was going to have to tell them right then. I am not sure if I feel better or worse for not being there for them to hug and vice versa. The thought of telling them over the phone was bad enough, in person would be too much. It was almost too much just talking about it to Kaia.

Since then it's been daily updates for the family. I decided that I couldn't be my normal introverted depressive self and hide away. If I was going to make it I needed all the support I can get. I'm stubborn, but I know I can also fall into those dark places it's hard to get out of, and from the little I'd already read, that can severely impact my survivability. So I got on Facebook and on my Deviantart account and told everyone I knew there what had happened. I hadn't expected it to make as much difference to me as it already has, but there it is. I need people too. I've already joined several sites for information and support and have more info on the way in the mail.

The big issue right now going to be location and stage of the tumor as well as worrying about possible unknown tumors elsewhere. Everything I've read has been fairly disheartening and encouraging at the same time. Great stories of survival peppered with awful details of the side effects of treatment. Most of these everyone already knows - nausea, loss of hair, weakness. What I didn't know was that I'd most likely lose my sense of taste, either permanently or temporarily. Even if it does come back, it won't be the same. I'm a foodie at heart so that will be rough psychologically. I will likely lose my ability to produce saliva or at least only be able to produce limited amounts. It doesn't sound like much until you think about eating and sleeping. The products recommended to cope with this side effect are almost more worrisome than losing my spit! Sprays and gels, yuck. If a neck dissection needs to be done, which I'm fairly certain it will, I will have my lymph nodes removed (not sure if they just take the one side that's effected or both) and some neck muscle removed. The radiation treatments will burn my skin, outside and inside my mouth and throat.

I have to say at this point that this is where my own curiosity and conjecture might be getting ahead of things. I haven't even had my first biopsy yet. The problem is; all the searching and reading I've done seem to indicate that, barring a simple lymph node infection or an abscess, a lump in the neck indicates cancer. And there are basically two types of cancer that affect the head and neck and they're both similar. Head and Neck Squamous Cell Carcinoma. So I don't have confirmation yet that this is what I have, but the odds of it "not" being HNSCC are remote at best.

This post was long as heck, mostly because I waited to start it and because I wanted to write everything down. I learned from my journals during my divorce that not only is it a good record to have, it helps organize your thoughts, think of things in new directions and is just good therapy. Parsing the experience down to basics. One day at a time. Baby steps.


Colleen Chapman said...

Peeg, thanks for letting us in your head and allowing us to walk with you during this journey.

Remember, you are NEVER alone. You are loved and prayed for and thought about constantly!

Josephine Cox said...

Dear Guy, I do not know where you live but my husband had oral cancer and was scheduled for radial neck surgery. We had ours done @ University of Michigan with Dr. Chepeha. He was a blessing that is what they specialize in, the hospital was great. He was in constant contact with us calling day eve/night with how soon surgery could be set up. Never got a bill from U of M. He walks on water and I'm a nurse. Husband did well happen in 2006 and you can not tell he had a radical neck surgery. Let me know if you need more information. Hugs.

Jenn Zeeb said...

My heart goes out to you, I will keep you in my thoughts and prayers, and remember family of any kind is a good thing. Let people help when you need help. I really think people don't know what to do or say most times and if they can help even a little let them. I have a cousin that just was diagnosed on April 1st and I feel helpless being on this side and would do anything to help. Maybe its just because we are kinda snarky in our family but make em do all the work Right? kidding {smiles!}

Unknown said...

Hi Guy,

I've just now read your whole blog. Sounds like you and I are going through very similar things just now. I first noticed my swollen neck gland before Christmas but silly me went to Mexico for two months (I had spent five months in hospital last winter due to DM) and didn't book the ultrasound appointment till I got back, then had to wait two months and three weeks! In the meantime the swelling would go up and down without hurting and slowly it became more difficult to swallow.

AS you know from my MSU posts I have had the CT scan but not the results yet. I also had a long consult with a radiation oncologist who did look inside and is sure there is cancer on my tongue at the back and the side, but not the tonsil. This was just a visual check though. The cancer centre has been wonderful, I seem to be getting a phone call almost every day. The PET scan is set up for a couple of days from now and the day after, a consult with an oncologist, a different one. Also I have a dental appointment for early next week.

I was given very similar information as you were about the effects of radiation. As far as losing taste, well last year I lost 50 lbs while bed ridden with a stomach tube thanks to the DM shutting down my swallowing mechanism, so I know the routine. (gained it all back, am also a foodie LOL) I am more worried about pain and disfigurement of my face even though I am now an 'old lady' and it shouldn't really matter.

Let's keep in touch along the way and maybe we can support each other and even help each other in some ways. For instance I read about sugarless candies to help lubricate our mouths. Hang in there!

Terry Alexander